Ophiasis pattern

I keep reading posts, and looking online, and trying to find answers that I know aren't there. I know no one knows if I will loose all my hair, and how fast or if it will all ever grown back again,

i decided to stop the injections. When more hair loss started thoughtful the hair and not just the nape I thought maybe I should get more injections, but I didn't.

Every treatment I read about, when stopped the hair falls back out. And I was the odd one who all the new growth fell out during the I injections, which was even more upsetting.

i am hoping I can be the one who doesn't lead to Alopecia Universalis or AT, but I am not hopeful at all. I haven't read anyone who has ophaiasis who has had regrowth at the nape, or hasn't lead to total hair loss. I could be wrong? Am I?

Thanks Csquared. Some days are just worse than others, and I know there will be days worse than today. My kids are done with school on Friday, I am hoping having them all home everyday will be a distraction, that or make me crazy

Hi and welcome
I am sorry to read your story and that your brother has Alopecia Universalis as well.

I did loose my hair in the ophiasis pattern and progressed to Alopecia Universalis at the age of 12. However as you say you are looking for answers that no one can give you as each persons story with Alopecia Areata can differ so much. I have heard of a lady who did get her hair back from this pattern, so it can happen! I just believe it is another factor along with age, hereditary factors that is taken into consideration when they are trying to give you a prognosis.

I gave up treatments at 14 because there was no response but then I have had a couple of poor regrowths in my teens and early twenties when I was having no treatments at all, Alopecia Areata has a mind of its own that for sure:crazy:

I hope you can enjoy the summer with your kids and try to just tackle one day at a time emotionally, what ever the outcome it gets better honestly
big hugs x

Hey, I just wanted to tell you, the nape was one of the places I lost most of my hair. It's grown back, but it was the second slowest place to respond. It took 3 years, and even now my crown is just filled in.
I know it's hard. It's the worst thing ever.
Just know you're never alone.

Hi and welcome, Ak13. My hairloss also started at the nape with diffuse thinning throughout as it progressed. I do not think it is impossible for regrowth to occur in this area; in my own case, it has been a very slow process, but I am getting some regrowth. Never give up hope and don't be discouraged by all the negative information regarding this pattern, as it is possible to have regrowth, I think this area is more stubborn and takes a lot longer to respond to treatments though. The unpredictability of this condition is definitely frustrating because you just do not know what it is going to do and everyone responds differently to treatments.

Thanks starshine. Aside from a DO and lots of vitamins and my thyroid Meds, I am doing nothing. I know I need to find a good dermatologist that specializes in hair loss, but I just don't know if I want to try anything else either. I am afraid if I try something els it will just make the hair I have left fall out faster, and the hair left is getting so bad now. Ugh

Hi Ak13, I have Alopecia Areata Ophiasis pattern. Mine has been the same now for coming up to 15 years. Totally resistant to any treatments. The pattern never changes. My Dermatologist's opinion is that it won't change from this (i.e I won't get total loss as it has remained so stable for so long and I have never lost eyebrows/eyelashes etc. I am crossing my fingers he is right, although I am currently contemplating a complete head shave anyway, as having half a head of hair is really stopping me from living my life, so am thinking of getting a vacuum wig or Follea gripper. One solution I did use for a few years was I had a piece made that was an exact template of my missing 'underside'. It was a latex (I think) piece and I glued it on, kept it on for a week at a time and it gave me a full head of hair and was undetectable. Unfortunately, though I seem to have become allergic to it, so can't stand it on for more than a few hours. Other than that, I wear a long Noriko topper and get away with it (my bio hair is long so covers the nape).

Patches I was going to try bonding a piece to the back when the loss was only in the back, but it is now throughout the while top, and I found a spot in my eyebrow and on my legs in the past few days.
I too worry when it is windy and the back all picking up and showing. I want to get a topper, but i think i will need a full wig sooner than later. I am researching what to get. Everyone here is so nice and helpful. I know a ton more than I did just joining the board a short time ago.

2013 has been a strange year for me. I'm 49. In January I started getting really itchy patches on my legs, which eventually spread to arms and torso. Really itchy and annoying and ugly. The dermatologist biopsied a spot and diagnosed it as spongiotic dermatitis. Really no cure, it's still here. Then in May, I noticed that I was losing my hair. By July I had three fairly large bald patches, each with a small patch of hair in the center like a donut. I went through two months of scalp injections and will not be returning for more. I tried a wig and got good feedback from friends and family, but this is Fort Worth and it's HOT. I ditched the wig, shaved my head, and just now walk around bald, but the patches are still noticable (even shaving, I can't achieve a totally bald look). I've had thyroid issues forever (not Hashimoto's, just underactive). My daughter has alopecia universalis - she lost her hair at 9 years old and is 20 now. As a result, my baldness isn't much of an issue with us. It's just a little perplexing.

2013 has been a strange year for me. I'm 49. In January I started getting really itchy patches on my legs, which eventually spread to arms and torso. Really itchy and annoying and ugly. The dermatologist biopsied a spot and diagnosed it as spongiotic dermatitis. Really no cure, it's still here. Then in May, I noticed that I was losing my hair. By July I had three fairly large bald patches, each with a small patch of hair in the center like a donut. I went through two months of scalp injections and will not be returning for more. I tried a wig and got good feedback from friends and family, but this is Fort Worth and it's HOT. I ditched the wig, shaved my head, and just now walk around bald, but the patches are still noticable (even shaving, I can't achieve a totally bald look). I've had thyroid issues forever (not Hashimoto's, just underactive). My daughter has alopecia universalis - she lost her hair at 9 years old and is 20 now. As a result, my baldness isn't much of an issue with us. It's just a little perplexing.

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Welcome to Her Alopecia. Sorry to hear about your hairloss. My hairloss is also from Alopecia Areata which I started having bouts of as a very young child. It got severe again in my 40's (who knows why) and by 50 I was totalis and then almost universalis at 52 when my brows and lashes went. Strange condition this is because my eyelashes regrew almost 2 years ago now and this year I've seen the return of my eyebrows which have been totally gone for about 8 yrs. Alopecia Areata doesn't seem to follow a set pattern with any two cases alike.

I also have an underactive thyroid and another autoimmune condition called Sjogrens Syndrome.

I had to wear wigs on and off throughout my life so I'm not a big fan of wearing them though there are dressy occasions when hair completes the look for me. It took me a long time to be comfortable with my natural bald head. I'm from a generation where there was no available support or awareness of what Alopecia Areata was. The online support and awareness being promoted nowadays by various support groups especially NAAF has taken away my shame and embarassment over a condition I have no control over and which doesn't change who I am as a person. I'm glad to hear that Alopecia Areata is not much of an issue you and your daughter.

What you are talking about when you say you can't achieve a totally bald look is often referred to as the "map of the world" in the Alopecia Areata community. I attend the NAAF conferences each year. I have posted the medical question and answers from the "Ask the Experts" session. I will include the link here. The question about disguising the "map of the world" look was asked there . One of the panel suggested "Dermablend" which is a skin concealer. Maybe you could try that.

2013 has been a strange year for me. I'm 49. In January I started getting really itchy patches on my legs, which eventually spread to arms and torso. Really itchy and annoying and ugly. The dermatologist biopsied a spot and diagnosed it as spongiotic dermatitis. Really no cure, it's still here. Then in May, I noticed that I was losing my hair. By July I had three fairly large bald patches, each with a small patch of hair in the center like a donut. I went through two months of scalp injections and will not be returning for more. I tried a wig and got good feedback from friends and family, but this is Fort Worth and it's HOT. I ditched the wig, shaved my head, and just now walk around bald, but the patches are still noticable (even shaving, I can't achieve a totally bald look). I've had thyroid issues forever (not Hashimoto's, just underactive). My daughter has alopecia universalis - she lost her hair at 9 years old and is 20 now. As a result, my baldness isn't much of an issue with us. It's just a little perplexing.

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BJ - Our daughter (age 12) is losing her hair at an alarming rate, and I was wondering if you might be able to recommend a pediatric dermatologist (is there such a thing?) in this area; we live near downtown Fort Worth. Our daughter has Down syndrome, so she is at a much higher risk of developing Alopecia; in looking at pictures online, what she has sure does look like Alopecia Ophiasis. She recently started on thyroid meds and has been on a gluten-free diet since 2008 (diagnosed with Celiac Disease). We have an appointment with a dermatologist that her pediatrician recommended, and we have a friend who is a dermatologist as well; I'd just like to deal with one who is knowledgeable about this type of hair loss. It sounds like we might need to start looking for wigs.....

I'm sorry to hear that your daughter is experiencing hair loss from Alopecia Areata. With young children you want to be very careful that any treatments you are considering are safe. The bottom line at the present time is that there are treatments to help regrow the hair that has been lost but no "cure"

There is a wonderful support organization available that was not in existence when my Alopecia Areata began some 58 yrs. ago called the National Alopecia Areata Foundation or NAAF for short. They have a very helpful & informative website: www.naaf.org.

You can write to laura@naaf.org She has a list of dermatologists across the country that treats alopecia areata patients.

Has any of you had successful treatment of ophiasis pattern and if you did what helped?

I was diagnosed few days ago after 1.5 year of wrong diagnosis that falling was due to stress.

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Hi! I have had alopecia areata in the ophiasis pattern for around four years now (I am 19 right now) and I have tried quite a few treatments including steroid injections, topical steroids, Xtrac laser treatments, steroid pills (dexamethasone), Methotrexate, and I have just started immunotherapy. I have had pretty good success with getting periodical steroid injections and using topical steroid creams like clobetasol ointment and anthralin cream. Obviously nothing has been a total fix for stopping my bald spots completely but these methods have worked the best for me so far as of getting regrowth started! I just started immunotherapy with DPCP sensitization and I am hoping that I will get good results- my derm told me that the success rate is around 60% for patients with alopecia areata and it will hopefully stop me from getting new spots as well! It is a bit uncomfortable because you have to have irritation for the treatment to work and you have to go in every week to get the compound painted on but I am kind of willing to try anything at this point